Sherri Belanger

I was a bit wary to share my story and put my face to this frustrating disease, but after another night of awakening in pain and thinking about how much support I’ve found in reading others AS stories, I felt as if I should.

For starters, I’m 28 years old and a very busy hairstylist in Los Angeles. I absolutely love what I do and hope my disease will allow me to work hard in my profession until I choose not to any longer.

For as long as I can remember I’ve lived with a lot of back pain. I have scoliosis, so I always assumed my pain was from that. At around age 15 the pain started becoming so severe my parents took me to the doctor to see if my scoliosis had gotten worse. The doctor checked me out, said my scoliosis was so slight it shouldn’t be causing me pain, and then proceeded to tell my mother that my pain was probably due to the fact that I was petite and had a “large chest”. Yup my doctor went there. My mom thought it was hilarious, and I at 15 was mortified, but I remember the frustration I felt, because my pain hurt more than they all seemed to realize.

A day never goes by without pain, but at times it gets so severe it puts me out for weeks. The first time this happened was when I was 17. I was laying down, and my back was very tender and sore, and out of no where I felt the most excruciating pain throughout my entire body. I couldn’t move or breathe without making it worse and literally fell out of bed to the floor screaming for help. My dad carried me to the car and brought me to the hospital. I had no clue what was going on, but when they even tried to inject me with pain medication it hurt when they touched my skin. The nurse told me I must have pinched a nerve and to relax because other people are suffering way more around me, and I shouldn’t be so worked up. At the time, I felt really bad, because I knew I was in more pain than I have ever felt, but if I had only “pinched a nerve” how could I be in tears and flinching when she touched my skin. I felt ashamed and guilty because I knew people were fighting greater battles around me, and I did everything I could to keep quiet until we left the hospital. Looking back this saddens me, because I was shluffed off for what I now know to be my painful disease, and I hate that the nurse made me feel that way. How could she know though? To her I probably seemed like some dramatic 17 year old who didn’t want to go to school the next day.

These sort of intense flare ups happened time and time again, and I could never figure out what was wrong. Doctors couldn’t help me and just wanted to give me pain killers, which didn’t help me at all. I tried acupuncture, chiropractors, psychical therapy, to no avail. At around age 24 my knees started to go. I used to run a 3 miles a few days a week, and literally one day it was if my knees broke. I’m super stubborn and will push myself until I literally can’t do something, and I did that with the running. I’d still try hoping for a different outcome, but after about 5 minutes on the run I could barely even walk. Within the past few years my hips and hands have also become affected. My hips have been one of my biggest struggles, because it hurts to sit too long, and it hurts even worse getting up from sitting. I’ve been able to push myself at times on the treadmill when I wasn’t so flared up, but when my knees and hips are hurting, it’s near impossible to exercise, which is extremely frustrating! My hands make it hard to work sometimes, but so far I can push through it. I love what I do so much that my passion will take over my pain. My hands do show my disease though. They are so arthritic and ugly, and I’m really self conscious about them.

So how I got my diagnosis was a bit interesting. About 3 years ago I started having issues with my eyes, mainly my right eye. I’d wake up in the morning in the dark, grab my cellphone to check emails and be blinded by the light of my phone. The pain was gnarly, my eye would get swollen and so red, and I couldn’t really keep it open in the light. Each time this happened I went to eye doctors to figure out what was wrong. They would prescribe me a steroid eye drop which would make it go away, but a few months later it would always come back. Then out of no where my retna tore. I got a laser procedure to seal the tear, but how the hell did that happen?! I was so frustrated and confused. After all this my eye doctor recommended I get blood work done to check for any auto immune diseases. He said nothing seemed to be wrong with my eye, and it was if my body was attacking itself. And sure enough, drum roll please, he was right! Not only did I turn out to have Ankylosing Spondylitis, but I had Uveitis. Finally an answer to all my suffering for so long.

Currently I’m hopeful. I hate medicine, but if something can help me live pain free then I’m open minded to taking it. Besides the body pain, the chronic fatigue associated with the disease is what gets me. I naturally have tons of energy, and out of no where it’s as if someone turns off my light switch on a daily basis. It’s been hard for me to explain my disease to people, mainly because most people around me would never guess I’m suffering. I’m not a complainer, and it doesn’t do anyone any good to talk about the negative in your life, so I just never have. After getting diagnosed, my fear was that people would think I’m bluffing, and I’d have to carry around stuff from my rheumatologist to prove my case. My loved ones tell me I’m crazy for feeling that way, but I still do at times. I’ve found so much support on different blogs and websites, and I feel as if it’s my duty to share my story in case it helps another fellow AS sufferer. It’s the hardest thing ever to be 28 years old and look healthy, but feel 80 years old on the inside. How can someone without AS even grasp that? I believe the mind is a powerful thing though, so on the days where I can mentally push beyond the pain, I choose to have awesome days.

For my AS peeps, don’t let this disease ruin your life. We can’t let this disease fully control us. Just as everyone else has a choice when they get out of bed in the morning if they are going to have a good day or not, people with AS have the same choice. Sure it takes us longer to get out of bed, and we have to oil out our creaks and joints and walk through the pain, but we can still choose to mentally feel good that day.

Los Angeles, California United States of America


10 Responses to “Sherri Belanger”

  1. Dear Sherri,
    Thank you so much for sharing your story with us. I can relate to a lot of what you said. I too suffered a long time in silence and in shame, because people were always quick to say there are people worse off than you. That is true but it also doesn’t in any way minimize what other people go through in their lives. Everyone is valid in their own feelings about their own lives. Stay strong. Thank you for having the courage to share, I understand how hard that was because it was for me also.
    Sincerely Cookie

  2. Thanks for this. I was just diagnosed and can relate to everything you said. I was told more then once to get a grip on my pain when it was really too much to bear. I look very normal and healthy on the outside but feel very old on the inside. It’s like I already know my 80 year old self. People look at me strange when I can’t write or move out of the way fast enough. Good luck with your journey.
    Melissa

  3. Thank you I really enjoyed reading your post. I am 24 and have been dealing with ongoing iritis and AS and now I’m noticing my lower back is curving along with in between my shoulder blades. I don’t really keep up with my doctors because of insurance problems. I work in fast foodalmost 60 hours a week and it’s hard. I an not sure who said staying active would help but at 60 hours a week anda fine year old son I understand what you mean about being in pain. Thank you again maybe one day I’ll have time to post my story.

  4. Hello, I just want to thank you for this. It is uncanny how congruent your experience has been to mine. I have been passed around and passed off by doctors for years, even after uveitis and hlab27 positive dx. I have been told I was just depressed, had fibromyalgia, etc. Recently it has gotten so bad, that I stopped accepting this and insisted on a thorough work up for answers. I have thoracic scoli. I have ankylosing spondylitis. It has caused random tendonitis, muscle spasms and tenderness, joint problems all over, spine, S.I. Joints, hip, shoulder, and knee problems particularly. I have had the skin burning, some days I swear my hair hurts! My hands curl and can’t grasp some days. My toes hurt from the weight of sheets on them. I am stiff as a board for 12 hours after I wake up. I have waves of fatigue. Sleep doesn’t come easy with chronic pain. You are definately not alone. I am a 31 year old energetic, positive lady! I learned to minimize complaining, because I felt like people didn’t believe me, and it doesn’t help a thing. I wish we had put the puzzle pieces together sooner, but, I’m pretty sure all the women in my family have had this! You have made me feel a little bit stronger. I have a little bit more acceptance of my body not being the perfect specimen I once felt I had. I mean, I’m athletic! I’m able bodied! Why is my back failing at a young age?! Let’s hang in there, and be super women! Let’s run circles around people that aren’t even in as much pain as we are! I know that there are people with visceral pain that’s probably worse, and I have many, many blessings to be thankful for. You rock!
    Sincerely, Katrina

    • Katrina does your doctor have you on a Tnf blocker? Such as enbrel, which is what i use it gets rid of tendinitis. also methotrexate is a amazing arthritis medication. It is used with rheumatoid but doctors are aware it works with As. I take on weekends it makes sleepy for two days but the rest of the week stiffness is all gone and it is amazing. Hope This Helps. Debra_cripps@sbcglobal.net.

  5. I have had the same pain for a while and the same eyes hurt,my doctor was very unhelpful in treating me.
    thanks for your story and god bless.

  6. Well i am 50 now but my symptoms were really nothing before 10/2009. in 1998 i was rear ended by a 2 ton freezer truck. so i went to chiro and really all went away except occasional stiffness. in 2009 i fell down steps of school bus hit my head,neck,back,rt leg. the pain was mostly in my head and neck, well blood test found hemochromotosis ,this is to much iron in my body, treatment started, then pain still got worse in back and neck, feet,shoulder, did artho panel found hla-b27 postive. then in 2014 wheelchair ramp from schoolbus fell on my head knocking me to ground. caused brain injury and making back,neck worse. also forgot to add in 2011 had both hipps replaced due to born with hip displacement. but not fixed. so my point is i had to give up working my pain keeps me bed ridden and so many people judge becauee i do take meds , good days are very few i wish their was better meds and treatments. one thing i have found is air pressure makes big difference. Glad you shared your story and just know their is more of us out their feel free to contact anytime . Thanks debra_cripps@sbcglobal.net.

  7. Wow. I have goosebumps after reading this. I’m not as young as you, but I’m cute, full of life, perky, and always happy, so it’s sometimes difficult to be taken seriously. People who look or act a certain way couldn’t possibly be living with chronic, debilitating pain. I have severe scoliosis, but wasn’t diagnosed until the age of 38 (I’m 40 now.) I originally went in to a back doctor because I couldn’t sleep for more than 4 or 5 hours without being in so much pain I had to get up. He did an MRI and diagnosed me with scoliosis, kyphosis, and ankylosing spondylitis. The scoliosis was so severe that they didn’t pay attention to anything else once I went to the scoli specialist. They asked if I wanted “The Surgery.” Total spinal fusion (S curve with cervical 55 degree and thoracic 58) complete with titanium rods and bone grafts. No thanks!! So they referred me to pain management. That was a year ago and all they can do is provide strong pain killers and occasional steroid taper packs. The taper packs help, but the pain killers don’t. They just make it more bearable to be in pain. In the last year I’ve suffered from episodes where I thought I was going blind and it gets diagnosed as a virus with a script for steroid drops. Two days ago, before I figured out that it’s the AS, I told my husband I think I have chrons disease. Today, the reason I came across it is because I’ve been trying to Google a correlation between scoliosis and the ridiculous heel pain I’ve had for months. Every hallmark or symptom of AS (besides psoriasis) is terribly familiar. I’m kind of angry that nobody linked my chief complaint of horrible pain at night to the diagnosis that fit instead of the “obvious” cause. I’d love to chat with you. I have lots of questions! I’ve been looking at biologics and am curious if you’ve tried or been offered them. Best of luck. I hope you find what works!

  8. Dear Sherri, I am a 36 year old woman who is small and petite. I am mostly very active. I have a 3 year old that I love and to provide the best, most childhood for. I groomed pets for 12 years until standing in weird positions finally made my back pain to much to continue. I love people and can not sit still for work so now I am a server, which I love! I truly enjoy making people happy! I’m one of those people that if don’t know me I put on that customer service smile and act like everything is great. I have been trying to get help and properly diagnosed for the past 8 years but I feel no doctor is taking me seriously. I have even said my spine hurts can you send me for an x ray, something is wrong. It took 3 years to get that x ray done. It shows I have scoliosis with 1 reverse curve in my neck, 2 s curvatures in my thoracic and a c curve in my lumbar all are considered minor no doctor has even told me what degrees each curve is. However I know something more going on. I’m usually full of energy but I get so fatigued at times, 2 years ago my knees started hurting ( I have even had baker cyst on the back of my knees) and ankle pain started, and my heels hurt deep into the heel. A doctor also told me and tried to schedule a breast reduction surgery (I weigh 95 lbs and have c cup) I could totally understand if I was rocking some DD or larger. Honestly most people comment on how small my breast look. I have tested positive for an ANA factor, I have also tested positive for HLA-B27, yet still no help. The only time I have received help was when my entire back and neck completely spasms and I could barely move that’s when I went to urgent care. At urgent care they gave me a steroid shot, some mussel relaxors, and some pain medication. Which helped! After goings to urgent care about 4 times each because my back completely spasms I was told I could not continue to come back for this problem, my PC doctor should be helping me. I have seen multiple doctors 3 PC who did not take seriously, 1 anesthesiologist that specializes in pain (who believed I had pain and AS with scoliosis) but he did not take insurance and it $450 upfront in cash or credit card to see him more if he gave you a shot or a treatment, he also prescribed extremely expensive medication my insurance would not cover and he would not work with insurance company to see about generic) 1 suppose of spine specialist (that said “he does not diagnosis ” and I have post traumatic stress from labor and delivery so I need a psychiatrist) by the way my labor and delivery was great minus the part of breaking 4 needles trying to get the epidural in and 1 rheumatologist that was the doctor to finally do the x ray and told me I test positive for HLA-B27 but it’s just scoliosis and my other pain is just my body getting older. Any advice you can give on getting the proper medical help I need would be so very grateful appreciated!! I have been to the chiropractor and that helps for a few hours then I’m stiff again. I do massages bi weekly which are fabulous but not enough. I want the pain to be at minimum so everyday isn’t such a struggle. Mostly I want to be the consistent, fun, entertaining, loving, adventurous Mom my little one deserves. I feel like she gets that Mom sometimes and sometimes she gets the Mom laying on the couch saying sorry sweetie Mommy can’t do that today mommy is hurting to much. Its not fair to my angel. I am finally going to see a PC next week and I am praying he helps he and can get me a proper diagnosis.

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